Could use some good thoughts for my granddaughter

[DisneyWorldMimi]

My granddaughter is 10 years old and recently went to Shand's in Gainesville for some tests.
From the time she was little she has had different problems. She was in the hospital for a week and when she was released they diagnosed her with Acid Reflux. She went in vomiting and not being able to keep anything down. Every day, she would eat and it would come back up.
Eventually they gave her an laxative and cleaned her out. She was fine after that. While she was still in the hospital, they did an endoscopy as well. Diagnosing her with Acid Reflux when she was totally constipated is ridiculous.
She also had some trouble with her legs and feet and how she walked. As she has gotten older, she complains of her legs hurting after a certain amount of time walking.
When she goes to sleep, her temperature rises. At first her primary doctor didn't believe my daughter. Then at an appointment one day, the nurse took her temp and it was normal. While waiting for the doctor, she fell asleep. The doctor touched her forehead and could tell it had gone up. He checked it and it was just above 100.

While at Shand's they took 22 vials of blood, did CT scans, ultrasounds, and an EMG test on her arms and legs. The numbing solution they used on her leg, she had a reaction to, so she had to be treated for that. Now we are waiting on the results of the blood and genetic tests.

When my daughter found out prior to going down that they would be taking a lot of blood, we all knew that was going to be next to impossible. I have watched my granddaughter climb a wall in the ER to get away from someone with a needle. They explained to her that they would stick a needle in and then switch out the vials without removing the needle. They were able to do most in one arm until it started to clot. Then they changed arms. My daughter said she did very good on that.

With the EMG, they were checking her nerves and muscles, thinking that maybe there was something going on there to cause the pain, which she describes as a painful tingling, kind of like when you foot/leg has fallen asleep and it really hurts when you first try to walk around on it. But nothing showed on that.

My daughter found that they have been trying to send her down to Shand's for the last 5 years and nothing was ever done. Shand's found referrals that were never submitted by some of her doctors to the insurance company. Just after Covid came here, my granddaughter had to go to the ER for something and they put her in a room right away because as they told my daughter "she is immuno-compromised." This was the first my daughter had ever been told this. We have no idea how long she has been like this.

She is a beautiful little girl who has a very big heart and loves helping people. The 2019 school year after Hurricane Michael, she wanted to raise money to give pencil bags to all the school age kids, so that they would have them. She knew that a lot of children in our area lost so much. She and my daughter have sponsored children at Christmas the past couple of years.

We would just like some answers to her medical problems instead of being ignored or given to someone else to try and figure it out. If you could keep her in your thoughts and prayers, I would greatly appreciate it.

 

[Wayland10]

Best wishes for your granddaughter and family. I hope they find out what the problem is and that it is easily and quickly treatable.

 

[mommasita]

That is indeed a long time. It sounds like she has undergone an awful lot of testing without any answers.. poor thing. I will most definitely keep your granddaughter and your family in my thoughts and prayerS.

 

[J'aime Paris]

Prayers to your granddaughter!!
Sounds like she is finally in capable hands....I hope she gets the medical attention she needs

 

[jerseygal]

I hope that your granddaughter and family finally find some answers in the NEW Year to her medical issues..Nothing worse than not knowing..Positive thoughts for your family!!!

 

[pigletliz]

Prayers for your granddaughter, family and for Shand's finding out the source of her medical issues.

 

[RogueX]

I'm sorry to hear your granddaughter is going through this. Has anyone ever mentioned Cyclic Vomit Syndrome for the vomiting? Ultimately this was what I was diagnosed with several years ago after no one could figure out why my vomiting wouldn't stop. It wasn't a GI doctor though who made the diagnosis, it was a neurologist who put the pieces together.



My nephew also has Cyclic Vomiting Syndrome.

 

[PollyannaMom]

If you could keep her in your thoughts and prayers, I would greatly appreciate it.

Of course!!

She sounds like a sweet kid, and I hope they figure it out and can start helping her right away.

 

[lisaviolet]

Hope you figure everything out. Love sent to your entire family. How frustrating.

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Please have her b12 levels checked if you haven't, just in case. And get the exact number. Because doctors do not always understand the issues surround this serious deficiency themselves.

A lower level of a simple vitamin seems like nothing, but it affects the entire body. And tingling, nerve pain are prominent symptoms. Does she have foot drop at all?

I have pernicious anemia (auto-immune) which means you do not absorb b12 from your diet. This is most often the reason why the levels are lower. But children can *also* acquire low levels from vegan/vegetarian mothers, that do not watch their b12 levels themselves.

Just cross it off, if it hasn't been.


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I hope whatever is affecting her is found soon. Do not hesitate to advocate aggressively. Not rudely of course, but at times like these one needs to be relentlessly firm.

 

[teruterubouzu]

Prayers for your granddaughter. I hope they find the cause of her illness soon.

 

[SnowWhite1981]

Praying that you find some answers for the health issues!

 

[DisneyWorldMimi]

They did check her B12 in December. Her's was 667pg/mL. Since my first post in December, she has been 3 times more, January, February & just a week ago. She goes down in July for a lip biopsy. They have confirmed Gastroparesis and are also looking at Sjorgren's Syndrome. She does not produce enough tears and salvia. This is where the lip biopsy comes in. They tried to do in February and the numbing agent didn't take. So when she goes in July, they will put her under and do that and I think one other test. They are going to get the ophthamologist to check her eyes again to see if there have been any changes. This way all the different departments will be up to date and in sync.
After the July visit, she won't go back again until February next year.
She has been challenging herself as far as walking goes. My daughter got them both a step tracker. She signs Natalie up for different virtual races/walks that she wants to do. Now she is also taking swim lessons, which will also be very good for her legs. When they were down last week, she couldn't wait to go down to the pool to practice.
She still can sleep long hours though. This makes her even more tired.
Here is just ONE page of 47 pages of tests that she had done in December.

 

[mommasita]

They did check her B12 in December. Her's was 667pg/mL. Since my first post in December, she has been 3 times more, January, February & just a week ago. She goes down in July for a lip biopsy. They have confirmed Gastroparesis and are also looking at Sjorgren's Syndrome. She does not produce enough tears and salvia. This is where the lip biopsy comes in. They tried to do in February and the numbing agent didn't take. So when she goes in July, they will put her under and do that and I think one other test. They are going to get the ophthamologist to check her eyes again to see if there have been any changes. This way all the different departments will be up to date and in sync.
After the July visit, she won't go back again until February next year.
She has been challenging herself as far as walking goes. My daughter got them both a step tracker. She signs Natalie up for different virtual races/walks that she wants to do. Now she is also taking swim lessons, which will also be very good for her legs. When they were down last week, she couldn't wait to go down to the pool to practice.
She still can sleep long hours though. This makes her even more tired.
Here is just ONE page of 47 pages of tests that she had done in December.
View attachment 584486

That is a lot of tests, poor thing, and all of you. I do haveSjogren's syndrome, diagnosed through the lip biopsy. It is a lot of dryness, eyes and other areas. I keep your family in my thoughts and prayers.

 

[DisneyWorldMimi]

DD & GD got back from another trip to Shands (hopped down to HS for a day). They did the lip biopsy and an ultrasound of her legs to make sure there were no clots or arthritis.
They did notice something very interesting on this visit that no one had mentioned on any other visit. They did her vitals and had her sitting in a chair that leans back (like what they use to draw blood). They put the finger monitor on her for her heart rate & oxygen level. They looked at her heart rate and it was sitting at 283. The doctor thought maybe something was wrong with the monitor. Brought in another monitor and it was the same. GD said that it was "doing that fluttery thing," where she could feel her heart really beating. DD put her hand on her chest and she could feel her heart beating fast.
They laid the chair back to let her relax and then started the ultrasound. DD said it took 45 minutes to get her heart rate under 200. Just as they were leaving they checked it again and it was up to 218.
DD had requested all GD's records from our local hospital and primary doctor. She was looking through them and her heart rate was very high for every visit. No doctor or nurse ever said anything about this to her, never questioned it, nothing. She said that every time her vitals were taken, they would do them quickly and write them down and go out of the room. On this visit one nurse tried to do that and DD had her do them again so that she could see what they were.
All this time, not one doctor has ever addressed her high heart rate EVER! Granted when she sees a needle to draw blood, she will climb the walls, literally. I watched her do it at 4 yo. It took 4 people to hold her to get blood. But for no doctor to ever mention an elevated heart rate that she has had since she was little it outrageous.
DD is going to file a complaint with the local hospital and discuss it with her primary doctor. No 11 yo should have a heart rate of 283 for any reason. The doctor that caught it was concerned and want her to watch it from now on. She has two new medications she is on. Her weight is now good for her height.
I was looking at her yesterday and her facial features are changing and while she doesn't completely look like my daughter as she did before, there is still some there. My DD looks like her father and half brother, very little of me in her. But I can't say that GD looks like her father, possibly someone in his family but not him. (he is not in the picture) She is maturing fast and while I have always thought that she was beautiful, I see her blossoming and changing and becoming even more beautiful.

 

[happymommy]

So sorry your granddaughter is going through this. My youngest had so many similar issues. POTS (gets dizzy so has to use a shower seat, had passed out at school once after standing quickly), severe joint pain (we started using a wheelchair at places like Disney), migraines, vomiting all the time. Finally at 16, after many specialists and tests, he was diagnosed with Ehlers-Danlos Syndrome. He was so sick that he had to finish 10th grade being homeschooled.

About a year and a half ago, he also got multiple tests (again) and has confirmed gastroparesis. For several years, he took erythromycin before meals to help, but that stopped working. We now get Domperidone from a pharmacy in Canada, as the US is pretty much the only country that it isn’t dispensed. It’s helping a lot, but is a pain that we have to get it by mail.

It took years of testing, even some thinking it was just in his head, to finally get the diagnosis. Your GD sounds so similar that I’d say it is something to ask the doctors about.

 

[DisneyWorldMimi]

So sorry your granddaughter is going through this. My youngest had so many similar issues. POTS (gets dizzy so has to use a shower seat, had passed out at school once after standing quickly), severe joint pain (we started using a wheelchair at places like Disney), migraines, vomiting all the time. Finally at 16, after many specialists and tests, he was diagnosed with Ehlers-Danlos Syndrome. He was so sick that he had to finish 10th grade being homeschooled.

About a year and a half ago, he also got multiple tests (again) and has confirmed gastroparesis. For several years, he took erythromycin before meals to help, but that stopped working. We now get Domperidone from a pharmacy in Canada, as the US is pretty much the only country that it isn’t dispensed. It’s helping a lot, but is a pain that we have to get it by mail.

It took years of testing, even some thinking it was just in his head, to finally get the diagnosis. Your GD sounds so similar that I’d say it is something to ask the doctors about.

Sorry that it took so long to diagnose your son. After looking at the past records, my DD was so mad that there were recommendations to get GD to Shands a number of years ago. No one followed up on the referrals. I have never liked her primary doctor. There was a nurse one time that made a comment that I thought was absolutely stupid (can't remember right now), but I thought how dare you say something like this. I think it had to do with something to with the way she acted up. She said something about if you can't control her now, how are you going to control her when she is older. We were there to talk to the doctor about somethings to do with her behavior that were unusual. This was some young nurse who probably didn't have any kids at all. The nurses never return calls, and probably never relay messages to the doctor that my daughter has left.

Besides the Sjogren's Syndrome, they are looking at one other thing, but my DD didn't say what it is. She has been diagnosed with gastroparesis and has a medication to take before meals.
When they went to HS last week, they took lots of breaks. They didn't get there until noon and only rode two rides. They did manage to make a droid. The hotel they stay at when they are at Shands is really good. Some of the people are furloughed cast members and they set up a small scavenger hunt for her. (I think it is open to others as well). One of DD's good friend's sister works there, so they enjoy the time while they are there. Since the hotel they had planned on going to down in Orlando cancelled, they just stayed at the one they were in. My daughter was going to pay for the extra nights, but the person at the desk said she would try submitting it to the insurance. She said all they can say is No. Well DD ended up with a call from the doctor on the Saturday, so it ended up being approved anyway.

 

[DisneyWorldMimi]

Here is a description of what is going on with my granddaughter. My daughter created a FB page called Natalie's Medical Journey.
This is the description from the page coming from my daughter:
"This Group is to help everyone stay updated on my daughter's Natalie medical journey. My daughter turned 11 on May 20th,2021 and has been fighting a medical battle since the age of one and it is rapidly getting worse. She struggles with vision problems (wears glasses, double vision, seeing spots), leg issues (leg pain in both legs), stomach pain, loss of appetite, headaches and fatigue (her body wants to sleep 18 to 20 hours a day), and daily fever (up to 104 when asleep). She now also struggles with Tachycardia "heart racing" episodes multiple times a week and the doctor is not sure why so they referred her to a cardiologist. We have taken multiple trips down to Gainesville to be seen at Shands/UF health for testing and appointments since the beginning of December 2020 and we finally have a diagnosis of Sjogren's syndrome and Gastroparesis. Doctors say that is just the beginning and more testing and appointments are required but I'm so happy to finally be heading in the right direction after all these years. Please keep her in your prayers!! "
When she was in the hospital for a week at the age of one, she went in vomiting and not keeping anything down. They would give her something for nausea and then she could eat. 30 minutes later, up it came. EVERY DAY. Vomiting, nausea, food, repeat. Finally did an enema and she was emptied out. The new doctor's said her digestive track had basically shut down and was not moving any thing due to the gastroparesis. The diagnosis upon release - wait for it --- "Acid Reflux". This child did not have acid reflux for seven days. I am glad she has a network of doctor's both local and in Gainesville that are watching out for her and doing everything for her.

 

[mommasita]

That is so much for a sweet young child.

I will check that page out (if possible not being a family member). This is just a rough week for me. I will look into it next week.

Maybe it is POTS they are looking into, as someone suggested above. Especially with the tachycardia.

Having a great set of Dr’s is a must, especially in today’s world.

 

[DisneyWorldMimi]

At Shands and other children's hospitals, they have a program called Tiny Super Heros. Natalie had some cards made and the kids trade cards between themselves. They have a FB page and you have to be a parent of a child in the program to join.
When my daughter & granddaughter moved in with us, when Natalie would get upset, one of our cats, Samson, would come in and get in her lap. He was always there for her. We called him her support cat. We really didn't realize just how much that was true. Recently he hadn't been feeling well and my husband & daughter took him to the vet, because his tongue looked strange. They kept him over the weekend and we were called on the Sunday and they didn't have a good prognosis for him. On the Monday, we went in to see him and when they brought him to the room, he knew us and got calm and started purring. His tongue looked terrible. They said they couldn't do surgery because there might now be enough tongue to salvage and it was also a bad area that bleeds a lot.
While we didn't want to, we knew he was in pain and could not eat, we made the decision to let him go. Natalie was thinking of coming with us, but we were glad she didn't. We got some of his fur and are going to put it in a locket for her with his picture. We got his ashes back today and the vet also had a paw print done for us.
My daughter is ordering a Tiny Super Hero cape for him and I am going to photo shop it onto a picture I have of him and then she is going to have cards made. We are going to possibly do Angel cards for him. They do have support cards for support animals. My daughter had t-shirts made that say "Natalie's Prayer Squad."
Natalie is working with the person who did those shirts, and trying to put together a shirt that includes "I am the Storm" saying for her Gastroparesis (green ribbon) and her Sjorgren's Syndrome (purple ribbon). She has an idea of what she wants, but is getting help for the person making the shirts.

 

[DisneyWorldMimi]

As I said in my previous post, our cat Samson passed away a couple weeks ago. We got his ashes back and today his Tiny Super Heros cape arrived. Natalie was surprised because she didn't know that her mom was going to order him one. I will be sewing the patches on it tomorrow. I put one on tonight, hand sewing, but I am going to try and do it on the machine instead. I will do the same for Natalie's cape.
Once the cape is ready we will get a picture so that I can put the cape on Samson, though Photo Shop.
The top right patch is his "One of Kind" patch, below that is his "Angel Squad" patch since he is now an angel looking over Natalie. At the bottom, is his "Sidekick 4 Life" patch and the last one is his "Tiny Super Heros Squad Official Member" patch. Once I clean this picture up, I will put the cape on him. It is one of the best we have.